Viewing 5 reply threads
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    • #16485
      Amanda
      Keymaster

      I’ve been reading a lot of comments stating how long it takes to get a correct diagnoses, adequate care and pALS are discouraged by the lack of treatments for ALS.  How can we get involved and bring about change? Are you motivated to get involved? What obstacles get in your way?  Do you have any ideas on how to bring more attention to ALS.

    • #16492
      Mary Tiknis
      Participant

      How can I get involved?

    • #16497
      Dave Dahl
      Participant

      I have contacted my representatives in D.C. about the RIGHT TO TRY act and how it is very telling that we allow the rich and famous to use experimental drugs, but not those of us who are literally fighting for our lives.

      I would do that, it can’t hurt.  Though there are few pALS out here, if we all write, call, however we can we might be able to move the needle.

      dave

    • #16500
      Amanda
      Keymaster

      Mary,

      You can contact  your state’s elected officials like Dave suggests.  Also, check out the ALS Association Advocacy information. The ALS Association has a national component that specifically targets changing laws etc. Here is the link I found. https://www.als.org/advocacy  Please keep us posted on what/how you and your family get involved.  Perhaps if we inspire one another then we can band together and get our voices heard.

    • #16501
      Amanda
      Keymaster

      @ Dave,

      You are right! and thank you for advocating for ALS.

      Have you found other ways to get involved or promote change?

    • #16505
      Dave Dahl
      Participant

      Not yet, I will try that other link (https://www.als.org/advocacy) as well.  I agree, Amanda, that we need to band together to get treatments approved for ALS patients.  We need people to see the incredible urgency for those who have been diagnosed.

      dave

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